Change is not a dirty word/ Motivation for lupus warriors

Lupus Resources

Lupus Information

This is probably one of the best and most well-known Lupus resources on the internet. You can buy a subscription to their publication Lupus Now or donate a subscription to someone with lupus who can’t afford one – the magazine is full of great articles about lupus treatments, facts and coping strategies. The website has personal stories from real lupus patients, a message board and information on how you can make a difference through volunteering and advocacy. They will also link you to scientific journals and other resources – if you only look at one Lupus website, let it be this one!

3/13 – Follow along the LFA’s Road to a Lupus Cure through their blog.

This group focuses on the huge range of autoimmune diseases, including a large section on Lupus. They have free publications to download and print, not only for yourself, but also to help friends and family better understand what having lupus means. Consider ordering their CD (it’s free) which contains a bunch of lupus brochures. Though it’s geared toward health providers, the information can help anyone better understand how to speak to their doctors about Lupus.

Based in both New York City and LA, this site hosts fundraising events to support Lupus research and assist the many Lupus patients who have limited resources. They also provide counseling, referral services and aid in applying for disability and other government aid. I’ve gone to a lot of their New York events and have always found the volunteers there incredibly supportive and helpful. If you live in the New York City or Los Angeles area, these folks are the ones to talk to!

Sites like LRI are where the real fight against lupus takes place. This funding organization doesn’t just specialize in lupus research, but in novel, innovative research tackling new ideas and approaches to understanding lupus that might not get support from more conventional sources. If you want to keep up with the latest information on lupus research, this is the site to watch. If you want to take a more active role in helping science whip lupus, you can find information about clinical trials at their sister site, LupusTrials.org.

Inflammation and damage to the kidneys is one of the most common effects of systemic lupus – so common, in fact, that the symptom has its own name, lupus nephritis. The NKF is your go-to place for all kidney-related issues and information on keeping your kidneys as healthy as possible.

Created by the American College of Rheumatology, the Lupus Initiative’s goal is to reduce (and hopefully eliminate) “disparities in the delivery of health care to patients with lupus” through free, accessible education. Geared toward healthcare providers, this is the site to give your doctors if you’re feeling your health care isn’t up to snuff, or if health resources are limited in your area. The Initiative provides a virtual college course on the diagnosis and treatment of lupus through media including PowerPoint slides and video reference library – and if the medical-speak is too complex, head over to the Patient section of the site, which includes recorded lectures and videos geared to patient’s specific needs.

This official journal of the Lupus Foundation of America is the first of its kind – a global medical journal open to the public. Subscribe to get email alerts on all groundbreaking lupus-related research. Free.

Lupus Support

This is a great support resource that covers not only Lupus, but other chronic illnesses. The Spoon Theory is a must-read if you want a glimpse of what living with one of these illnesses is really like or check out the message boards. Support the site by buying something from their gift shop or read the articles.

Another powerhouse of resources and information, the Lupus Alliance of America is a group of agencies committed to offering support and resources for lupus patients. Their website has information about government aid, clinical trials, lupus advocacy and support for caregivers as well.

This site is completely run by lupus patients and has tons of lupus resources, including a message board, articles from lupus patients and pages of links to other lupus websites and blogs. They also have a store stocked full of lupus-themed merchandise, the proceeds of which go to support lupus research and patient support. They publish a great newsletter that is chock-full of information and the website has a calendar of lupus events happening all over the US. A must- see site!

LupusLine is a national telephone counseling service that’s just one of the lupus support programs provided through the Hospital of Special Surgery. Staffed by volunteers, each caller is screened and then paired with a peer counselor who is either a lupus veteran or family member. Visit the site for more information, and consider volunteering to help others with lupus.

Lupus Publications

Published by the Lupus Foundation of America, Lupus Now is a quarterly magazine that features fun, upbeat and informational articles about all the facets of living with lupus. Subscriptions are available through the website or through your local LFA chapter. A must-read, especially for men and young children with lupus – who can often have a harder time finding information.

Other Lupus Links

Through this site you can either instantly download a symptom checklist (complete with tips for discussing symptoms with your doctor) or register for a free lupus journal containing monthly calendars, journaling tips and space to jot questions for your next appointment. Be advised that the website is created and funded by GlaxoSmithKline a for-profit healthcare company.

Another GlaxoSmithKline website, Us in Lupus offers informational videos of doctors answering some of the most common questions and concerns about lupus. They also have downloadable checklists and chock loads of inspirational stories. When you register, they will send you a welcome packet that includes Discussion Guides for you doctor, friends and family as well as periodic articles that match topics you want to keep up on.

2015 Top Lupus Blog – Healthline (3 years running!)

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How do you sort out the solid health information from the fluff?Med Nexus answers your health questions with published research articles.

Want to stay up-to-date on the latest Lupus research? Sign up to get free access to the journal of Lupus: Science and Medicine, an open-access medical journal on lupus research. Sign up here.

The Iodine website explains medication usage, side effects and more in easy-to-understand language. Check it out now! And try their toolbar plugin to help you decode medical jargon on any site you visit.

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About Me:

A breach-birth baby came flying into the world not only butt first, but folded neatly in half (there’s a great picture of my legs flying up and kicking myself in the head), I’ve had an unfortunate series of medical mishaps ever since. However, the pig-headed stubbornness of my Puerto Rican ancestors was passed down to me in spades and once in my nearly-crippled-with-arthritis teenage years, I made myself a promise. A really big promise.